About Me

I am a girl who fell in love, got married and wanted to have a regular ol' ordinary family. What I ended up getting was everything but.
This blog chronicles our journey as a family who was blessed with a very special child.
From the day we found out that she had only a 5% chance of living to the present, life has been a true roller coaster of emotions. And most surprisingly, more rewarding than I ever thought possible.
Click here to contact me.

The Harlie Fund

Due to the requests of many caring people, our family set up a legal trust fund, "THE HARLIE FUND" to help with Harlie's care. You may click here for more information or click on the donate button above.

The Harlie Crew

We invite each fan of Harlie to join the following initial crew members and commit to make a monthly contribution to The Harlie Fund.

With Christy's willingness to share, we have worried about, prayed for and rejoiced in the accomplishments of a remarkable girl. The members of The Harlie Crew together show their support by contributing monthly. If you would like to join us, please call Bill Jeffries at (804) 288-1672.

Sunday, August 26, 2012

Overall, I still think she looks better than I expected for Day 2. She has more swelling on the left side than the right. And you can't tell from the photos but her left eye is quite swollen and she can barely open it. Of course she won't look at me, or Tom. She's obviously, and understandably, quite angry at us right now.

Which reminds me of something really stupid someone said to me once. I hate to speak ill of a person. Especially when I think most people are well intentioned. But this one was crazy to me. In reference to Harlie having a lot of hospitalizations, she said,"Well, at least you get some good bonding time."

Clearly this person has been blessed with healthy children and has never had to sit bedside, help hold a crying, scared child down while a person in a mask inflicts pain on said child. Trust me when I say it is not "good bonding time" and it takes days to weeks before she will begin to forgive me and tell me she loves me again. And while I understand, it still hurts. I know I'm doing the best I can for her but it comes at a high cost sometimes.

Anyway, this doggone BAHA surgical site keeps rearing it's ugly head. Apparently the resident who saw her yesterday either asked someone to check behind him, or that's just part of the process. Because an ENT (although they call themselves OLR, for otolaryngologist) came to visit her this am and look at her incision site. Here's what it looks like:

That photo was taken on Wednesday, the day I tried to get her into the ENT because I thought it was pretty red. Did I even tell you that? I can't remember. I ended up having to take her into the pediatrician's office for some heavy duty antibiotic shots just in case. Her ENT was on vacation and the one covering for her couldn't get her in his schedule. So my pediatrician called and spoke to him and said that he said that it being red is part of the healing process and that it is highly unusual to get infected. So we have never got confirmation that it is or isn't infected.

So this doc comes to take a look and she says it's probably not infected, but that fluid sitting in there for a long time is an infection risk. So she wanted to tap it with a needle and drain it (that would confirm any/no infection).

They also needed to take out her arterial line and try to clean her mouth and face. And they wanted to do this tap bedside in the ICU, with some sedation and pain control. So, Tom and I discussed it.

My feeling was that we should leave it alone. There is no indication of infection and her ENT that did it said the swelling is normal and could take up to several months to go down. And I know and trust her. And the treatment wouldn't really change anyway. She's already on several antibiotics that would cover it.

However, we thought that being able to remove the arterial line and clean her up while she was somewhat sedated was a plus. And then we could finally put the infection question to bed once and for all. The doc said that she thought it was the right call and this is an excellent hospital, so we agreed.

Fat lotta good that did! That medication didn't touch her and she fought like crazy. So they weren't able to remove her A-line, or clean her up. And all they got out of it was blood. So they sent that for cultures (but she's already on ABs, so I don't think they're going to get back anything useful). Harlie was very traumatized, having been held down by four people, and she saw me stand there and let it all happen. I tried to be strong for her, but I had to turn away when they put the needle to her head.

She looks horrible, probably feels even worse, was scared, has no voice of her own, and I just wanted to go and pick her up and take her out of here. Sometimes being her mom feels like the hardest job in the world.

Here's what she looks like now...

After that she fell asleep and Tom and I went to get lunch. She is being moved to the floor today. Tom and I are hoping that this will be a positive change with less poking and proding and more room comfort for all of us.
We'll see. While we were gone, they removed her A-line and apparently she is ready to go. But we're waiting on something.
I guess that's it for now. I will update again when I can.
Much love,
-Christy xo

Huge hugs to all of you. Christy, I completely understand how you feel about feeling like your job of being her mother at times is the worst in the world. So many times when Anna Cate was a pin cushion I felt so helpless and I know she wanted to tell me off so many times....and she probably still does! But through it all and even to this day, I keep telling her how all that I do is truly to help her and I hope that she will understand all this one day.....hope....that is the the key word. I pray that Harlie has a good night and she enjoys being on her new floor in her new room. You and Tom made a great call about having them test for what is going on at her BAHA site....I would have done the same thing. Your little girl is strong and she has only learned from the best....you. I wish I could come up there and give you a big hug myself! Until I see you, you will have to just know I am thinking of you, Harlie and Tom often!

I think I can really see the difference already...her jaw line looks even and her eye looks great. I hope the swelling goes down soon and she continues to improve. She is such a tough cookie...I wish I could take her pain away. God keep her safe!

Murphy

Murphy is 13 and is in eighth grade. He is constantly making us laugh with his crazy sense of humor and wonderful imagination. He is a great big brother and adjusted with no problems to this role. He has been an easy kid to raise from the get-go (despite the fact he entered this world 5 weeks ahead of schedule).

Harlie Caroline

Harlie is 10 and is in fourth grade. She has Goldenhar Syndrome, VACTERL Association and a lung defect that required the removal of 2 lobes on the right side. After over 50 surgeries (4 of them open heart), she is remarkably age appropriate. She is the sweetest, funniest little girl I've ever met. You can't help but fall in love with her.

Cooper

Cooper is 8 and is in third grade. He is a very talkative, high energy and affectionate little guy. He is all boy and he is a very funny kid. We are so lucky to have him!

Rooney

Rooney was born on February 5, 2012. He has been a wonderful addition to our family. He is such a great little dog and I just can't imagine life without him now! I love him so much!!!